Death with dignity

PK. Ashokkumar remembers those days so well. He watched his friend’s wife slowly succumb to the rogue cells that were eating up her body. The two doctors tending 28-year-old Soumini Radhakrishnan knew they couldn’t keep her alive, but were determined that she would die with dignity. Kumar watched while they steered her towards a near painless death — giving birth to a movement that has now swept across Kerala.

“She was probably the first cancer patient in Kerala to receive palliative care,” says Ashokkumar, who came up with the idea of starting a community-based movement after witnessing the treatment received by Soumini at the Kozhikode medical college. With the two doctors — M.R. Rajagopal and Suresh Kumar — he set up the Pain and Palliative Care Society (PPCS) in the 1990s.

Palliative care — in which terminally ill patients are given medication and counselling to help them cope with pain and inevitable death — continues to make a buzz in Kerala.

“The gods have reason to be angry here,” jokes Muhammed Younus, a social worker-turned-businessman in Koyilandy, 20 kilometres from Kozhikode. “Over the last five years, we have been collecting more donations than all the religious places put together in our locality,” he says.

Younus spearheads the Koyilandy Palliative Care Society (KPCS) which tends to nearly 1,000 patients who suffer from advanced stages of cancer, AIDS, dementia and other terminal diseases. Its 500 volunteers — mainly college students — together with medical staff visit patients at home and offer them medical care and support.

KPCS is one of 230 neighbourhood networks in palliative care (NNPC) units that have come up in Kerala over last two decades.

The Kerala model of palliative care has been so successful that it has won plaudits from across the world. “It has re-written the history of palliative care,” notes Mhoira Leng, a palliative care expert from Scotland who is working in Kampala as part of the Hospice Uganda movement.

It started with Soumini. Dr Rajagopal and Dr Kumar ensured she did not have to suffer the pain normally associated with the last stages of cancer. And when death came two months later, she was mentally prepared because of the counselling she’d received from the doctors. “It was an eye-opener for us. Before this, we never knew that the sufferings of a dying cancer patient can be drastically diminished,” says Ashokkumar.

Palliative care seeks to reduce the severity of the symptoms of a disease rather than tackle the ailment when it is known that the patient is unlikely to survive. The care includes morphine to ease the pain, and counselling the patient and the family to help them cope with death.

“Nearly 60 per cent of people die after a prolonged illness,” says Dr Rajagopal, often called the father of the palliative care movement in India. He is the chairman of Pallium India, a charity that works with governments and medical institutions in other states to promote palliative care. It established eight palliative units in Thiruvananthapuram district in the last seven years.

The sufferings of terminally ill patients are considerable. For example, aggressive cancer treatment leads to side effects that are seldom treated. Besides, a patient confined to bed can develop painful bedsores. Prolonged illness can also lead to depression and other mental problems.

The volunteers deal with many of these issues. Even having a cup of tea or a meal with patients and their family can go a long way in resolving psychological problems. They also visit patients during festivals. Recently, Younus’s outfit took paraplegics under its care to a beach and arranged for performances by musicians and dancers.

Palliative care is a growing concern because experts stress that almost 66 per cent of people who die every year in the country can potentially benefit from such services. But statistics show that not even 4 per cent among them receive any assistance. “And 80 per cent of those who do, live in Kerala,” adds Chitra Venkateswaran, a psychiatrist working with the palliative care movement in the state. That’s not surprising, for palliative care services are available in every district of the state.

There are reasons Kerala has taken the lead. “Apart from social cohesion, political awareness and women’s emancipation contributed immensely,” says Dr E. Divakaran, director of the Institute of Palliative Care in Thrissur, who has been involved in the palliative care movement since 1995.

The government has done its bit too, for Kerala was the first state to draft a pain and palliative care policy. Moreover, the traditionally public healthcare system in the state has been more responsive than that in other states. Dr Rajagopal, who took up palliative care as a mission, is another reason why it spread in Kerala. “Our Kozhikode experiment actually turned a page in the history of palliative care,” says Ashokkumar.

The PPCS runs the Institute of Palliative Medicine, a 30-bed hospital for exclusive palliative care, and offers 24x7 home-based services across Kozhikode. It also trains medical and paramedical staff and volunteers from other parts of the state where new palliative care units are formed.

What worries health experts is the fact that palliative care is almost nonexistent in other parts of the country. According to the international group Human Rights Watch, which brought out a status report, Unbearable Pain, in October last year, the “vast majority” of India’s population does not have access to palliative care services.

Efforts are now being made to follow the Kerala experiment elsewhere. Pallium India is working closely with the Cancer Centre Welfare Home and Research Institute in Thakurpukur, and the Chittaranjan National Cancer Institute in Calcutta to set up palliative care centres there.

Small movements have been successful in Andhra Pradesh, Bihar, Mizoram, Uttar Pradesh and West Bengal. The Kerala story inspired a small team to found the Delhi-ites’ National Initiative in Palliative Care. Formed two years ago, it is trying to replicate what the NNPC is doing in Kerala. “We provide emotional and psychosocial support to 60 patients,” says its general secretary K.V. Hamza, a government employee who devotes his weekends and evenings to the cause.

One of the main hurdles in the way of effective palliative care is the lack of morphine. In 2008, India used an amount of morphine that was sufficient to adequately treat during that year only about 40,000 out of the estimated one million patients suffering from moderate to severe pain because of advanced cancer — that is, barely 4 per cent of those requiring it. And this is just with one disease.

The efforts of those involved in the movement have yielded some results. Rajagopal points out that when the movement started, each shipment of morphine required as many as five licences. Today, 14 states and Union territories have either amended or are in the process of changing their laws to make it easier to acquire morphine for such treatment.

A significant feature of the Kerala movement is that it is community driven. More than half of the Rs 12 crore the units spent on palliative care in 2008-2009 came from local donations — some as small as Rs 10 a month. In the Koyilandy unit most donors are students who contribute 50 paise a week. “Collections from a college of 2,000 students amounted to Rs 12,000 last month,” says Younus.

Small efforts — by large numbers of people — have ushered in a revolution in Kerala. It’s time the rest of the country followed suit. Death is inevitable — but pain or indignity isn’t.